One of the most intriguing PD stories of the year has been an unusual fashion trend taking place in Tasmania (Australia). Wearing a red light bucket on your head for Parkinson’s is literally turning heads in Tasmania.
The treatment is known as photobiomodulation. It is experimental and unproven. It does not claim to cure Parkinson’s. The people who have been experimenting with this technology claim to see slow and subtle improvements in PD symptoms over time. It is not a double-blind study, and it is possible a placebo effect is responsible for any improvements.
An article on the ABC News Australia website from February 2019 provides a good introduction to a group of people with Parkinson’s Disease who are self-experimenting with photobiomodulation as a treatment to ease PD symptoms, and the efforts to turn these experiments into a clinical trial.
Grace Winiecki spends 40 minutes each day with a red light bucket on her head — a device she claims is making a significant difference to her life.
http://www.abc.net.au/news/2019-02-24/clinical-trials-for-wearing-led-helmets-treatment-parkinsons/10836906
Kudos to Grace, as her picture turned PD photobiomodulation into a fashion statement. Dare I say, she became a fashion icon, and the gentleman in this picture was the first of many heads she turned with this bold new look.
Max Burr is the original patient zero of the PD photobiomodulation movement. He’s just not as photogenic when wearing his bucket, as featured in Weekend Australian Magazine 18 months earlier:
On a crisp and clear autumn day two years ago, when the sun was high in the sky but the air was cold on the ground, retired federal politician Max Burr was sitting in front of his computer at home in Launceston, desperately seeking some help.
With the tenacity of a seasoned politician, Burr, 78, opened his laptop and began to search. Before long he had found a research paper on the use of photobiomodulation — the term for light’s ability to modulate key biological processes at a cellular or genetic level — in animal testing for Parkinson’s disease, published by Sydney University’s Professor John Mitrofanis. “The paper showed that the use of 670-nanometre red light was protective of neurons in Parkinson’s,” Burr says. “So I sent John an email and said, ‘Look, this is all very interesting, I wouldn’t mind having a crack at it’. ”
ABC News in Adelaide posted a news video, featuring Max Burr, wearing the first generation design red light hat, designed by his friend, retired physician Catherine Hamilton. They enlisted the help of a local “Men’s Shed” to create different prototypes, and experimented with hard hats, bicycle helmets, hairdresser beauty shop dryers, and a timeless classic, the lamp shade, before finally settling on the now iconic red light bucket made famous by the news coverage.
(I had never heard of a Men’s Shed before. It’s a pretty interesting grass roots movement that started in Australia, originally focused on men’s health and well-being. Learn more about the movement here: https://mensshed.org/what-is-a-mens-shed/)
Max and Catherine were inspired by the research of Professor John Mitrofanis of the Department of Anatomy at the University of Sydney, Australia, who is an expert on photobiomodulation, and has conducted trials on mice. The professor cautioned Max that the treatment was experimental and unproven in humans.
Ever worn a bucket on your head to improve your health? 🤔🤔
Max Burr is a Tasmanian retired federal politician, and he does it every day.
He’s trying to keep his Parkinson’s symptoms at bay, and he’s seeing some surprising results!
Posted by ABC Adelaide on Tuesday, February 26, 2019
Link: https://www.facebook.com/abcadelaide/videos/380240256127343/
Catherine Hamilton has created a website to chronicle the project and provide DIY instructions for building red light hats: https://redlightsonthebrain.blog
Catherine became interested in red and near infrared light after reading “The Brain’s Way of Healing” by Norman Doidge, a book that we discussed in the previous post in this red light district series. Initially this interest was directed toward helping with her own knee pain, which she successfully treated using an 850nm LED light (designed to be used as part of a security system), which was purchased on eBay.
After doing more research, she asked her friend Max Burr, if he would be interested in trying this type of therapy to help with Parkinson’s Disease. They created a hat using 670nm LED strip lights, and Max wore it daily for 20 minutes. Over the course of 6 months, he saw improvement in the fine motor skills he had lost in his right hand. He enjoyed playing lawn bowls, but had stopped because of problems releasing the ball with his right hand, but after gradual improvement, he was able to resume playing lawn bowls using his right hand.
The following links provide more of the backstory as told by Catherine Hamilton:
Chapter 4 covered the effect of red and near infrared light on the brain and spinal cord, and there were some remarkable stories told. In passing, Doidge mentioned the positive effect of red and near infrared light on arthritic joints and damaged tendons.
I went hunting on Google Scholar and found some medical journal articles that supported this possibility. I had no idea how this could be possible, but it was worth a try. I went hunting for a way to shine near infrared light on my sore knee.
The lace was removed, and a 670nm LED strip put into it.
It was not going to win any millinery awards. But when the lights were turned on, it did was very effective at bathing the head in red light.
Interesting stuff, but where’s the research?
While there is a lot of research about photobiomodulation over the last 50 years, very little of this research has targeted Parkinson’s Disease. What little research there has been has been on animals, mice to be more precise. And, as referenced earlier, Professor John Mitrofanis is a co-author on most of this research.
Here are links to some of this research:
This study explores whether near‐infrared (NIr) light treatment neuroprotects dopaminergic cells in the substantia nigra pars compacta (SNc) and the zona incerta‐hypothalamus (ZI‐Hyp) from degeneration in 1‐methyl‐4‐phenyl‐1,2,3,6‐tetrahydropyridine (MPTP)‐treated mice.
...
Our major finding was that in the SNc there were significantly more dopaminergic cells in the MPTP‐NIr compared to the MPTP group (35%–45%).
...
In summary, our results indicate that NIr light treatment offers neuroprotection against MPTP toxicity for dopaminergic cells in the SNc, but not in the ZI‐Hyp.
To examine whether near‐infrared light (NIr) treatment reduces clinical signs and/or offers neuroprotection in a subacute 1‐methyl‐4‐phenyl‐1,2,3,6‐tetrahydropyridine (MPTP) monkey model of Parkinson disease.
Results
All monkeys in the MPTP group developed severe clinical and behavioral impairment (mean clinical scores = 21–34; n = 11). By contrast, the MPTP‐NIr group developed much less clinical and behavioral impairment (n = 9); some monkeys developed moderate clinical signs (mean scores = 11–15; n = 3), whereas the majority—quite remarkably—developed few clinical signs (mean scores = 1–6; n = 6). The monkeys that developed moderate clinical signs had hematic fluid in their optical fibers at postmortem, presumably limiting NIr exposure and overall clinical improvement. NIr was not toxic to brain tissue and offered neuroprotection to dopaminergic cells and their terminations against MPTP insult, particularly in animals that developed few clinical signs.
Front Neurosci. 2015; 9: 500. Published online 2016 Jan 11. doi: 10.3389/fnins.2015.00500
PMCID: PMC4707222
Alzheimer's and Parkinson's disease are the two most common neurodegenerative disorders. They develop after a progressive death of many neurons in the brain. Although therapies are available to treat the signs and symptoms of both diseases, the progression of neuronal death remains relentless, and it has proved difficult to slow or stop. Hence, there is a need to develop neuroprotective or disease-modifying treatments that stabilize this degeneration. Red to infrared light therapy (λ = 600–1070 nm), and in particular light in the near infrared (NIr) range, is emerging as a safe and effective therapy that is capable of arresting neuronal death. Previous studies have used NIr to treat tissue stressed by hypoxia, toxic insult, genetic mutation and mitochondrial dysfunction with much success. Here we propose NIr therapy as a neuroprotective or disease-modifying treatment for Alzheimer's and Parkinson's patients.
Red and infrared light (λ = 600–1,070 nm) therapy, known also as photobiomodulation, has been reported to offer neuroprotection and to improve locomotor behaviour in animal models of Parkinson's disease, from rodents to non-human primates (Rojas and Gonzalez-Lima, 2011; Hamblin, 2016; Johnstone et al. , 2016). The neuroprotective aspect of this therapy is particularly relevant; the saving of neurons that would normally die as a result of the parkinsonian degeneration, is without doubt, the “holy-grail” for this, and indeed all other neurodegenerative disorders. The stage is set for translation of light therapy to human patients and there is much hope for beneficial outcome. In this perspective article, I would like to consider two major issues of light therapy that relate to its neuroprotective function, issues that have intrigued many scientific colleagues, together with the wider community.
A number of recent studies have shown that photobiomodulation, the use of red to infrared light (λ = 600–1070 nm) on body tissues, has beneficial effects in many animal models of Parkinson's disease, from flies to monkeys (Hamblin, 2016; Johnstone et al., 2016; Mitrofanis, 2017). These benefits include, a restoration of the abnormal neuronal activity in the basal ganglia, an improvement in locomotive behaviour and reduction in clinical signs, as well as an increase in the survival patterns of neurones damaged by either the parkinsonian toxin or the genetic mutation of the model used. This latter neuroprotective disease-modifying effect is particularly relevant because it is the key process in Parkinson's disease and is currently not addressed by drug and surgical therapies ...
Photobiomodulation, which uses non-thermal and non-ionizing light in the visible and infrared spectrum, has been proposed as a potential strategy for improving the symptoms of patients with Par- kinson's disease (PD) [1], but this has not been tested in a random- ized controlled trial (RCT). We thus sought to assess whether photobiomodulation can ameliorate the cardinal motor symptoms of PD using an RCT design.
The present RCT (NCT03811613) was conducted from January 29theApril 6th, 2018.
...
Photobiomodulation improved gait speed in the fast rythm of the TMWT by 0.33 m/second on average, which is of potential clin- ical relevance as 0.23 m/second has been identified as the minimal detectable change [8]. Our findings are in agreement with those of a previous study that reported gait improvements in PD patients af- ter transcranial photobiomodulation [10], as well as with other pre- clinical studies that suggest that photobiomodulation could be a potential strategy against neurodegenerative diseases [1].
So, if you want to try this out yourself, what should you do?
Well, start by talking to your doctor. Read the research links above, and share the information with your doctor. Make an informed decision, because let’s be honest, this is weird science, and definitely experimental. Defective lights could even be dangerous!
If you decide to continue, the lights are the most important piece of the puzzle. Red and near infrared lights come in a baffling array of wavelengths.
The Tasmanian group observed the best results with a session using 670nm (dark red) LED lights, followed immediately by a session using 810nm LED lights. They caution that if you have any other kind of brain disease, including Parkinson’s Plus, only 670nm should be used.
So what, you ask. Surely it doesn’t matter? Surely red light, near infrared light – it’s all the same? One wavelength is as good as another?
Wavelength matters – please be cautious!
Catherine Hamilton’s team has published two DIY designs. The original is called Eliza, and they are now recommending an updated design, called the Cossack:
It is a low-cost way to get red and near infrared light onto your head. And if I can make it, anyone can.